AIDS and HIV, Illness and My Work

To say that having AIDS hasn’t affected my artwork I would be kidding myself. Yet in some real senses AIDS has not been a direct element in much of my work. Only a few pieces, mostly painting and mixed media with poetryMourning/Morning below are directly autobiographic. This itself is mostly a defensive reaction. Being publicly “out” about my HIV status was a very different experience in the early days of the epidemic. I have been infected over 30 years. People in beginning of the AIDS epidemic felt entitled to know any and all the intimate sexual details of your life, right down to your favorite positions. If you were as committed to public education as I was, you answered those impertinent questions as calmly and honestly as possible even when you had the sneaking suspicion that the question was more for voyeuristic reasons than education. In the post-Clinton era, it is hard to remember that these kinds of private questions were not asked even of public figures and certainly not anyone else. Since any party could devolve into a impromptu safe sex lecture, my work became a place of refuge where I set the boundaries of the discussion. In retrospect, I can see how the nude as subject matter has always been a way for me to explore my personal issues around privacy and how to retain dignity when feeling naked and exposed.

Mourning/Mourning, 1998, Twenty-three Xerographic 8 by 10 regularly spaced enlargements in six 40 in. by 16 in sections. Final Dimensions Vary.
Technically easy but emotionally difficult, it was made over three anniversaries of my son’s birthday. Text of final panel the final section below.

Mourning/Morning – it all feels the samespinning in this meatwheel of existencei’ve lost my place…Am i the mother in black?Or the Son rising….

AIDS has generally affected my work more indirectly. I originally started working in 3D because of HIV related changes in my eyes. There was a chance I would lose my eyesight. (I did not) and I wanted to be able to continue to make art. In addition because of my illness I have been involved with the outskirts of art therapy through my work on the book Be A Friend: Children with HIV Speak and with at-risk teenagers in the Canvas Project. Making art has always been my home-brewed medicine. Healing is so more than the absence of disease. In a backhanded way years of living with a potentially fatal illness has taught me more about life than about death. How moments count and time isprecious.

I think that I learned most how to cope with HIV from children. Initially the biggest lesson was how not to get caught up in self-pity. Children have none and their example can shame you out of most of your own. HIV is much more devastating physically for children yet they never feel sorry for themselves. When the pain or fever lets up, they laugh, they play and they don’t waste precious time.

My son’s disease cycle was particularly complex and we more or less lived in a children’s hospital for a year in 1990-1991. It gave me an opportunity to watch other children closely. I was struck by the difficultly and confusion children felt because of their parent’s and family’s anger and shame about the disease. Often parents would go to extreme lengths to hide the diagnosis. Remember at this point people with children who where HIV positive were having their houses burned down, losing jobs and being thrown out of churches. But it was very difficult for children to separate themselves mentally from the virus. They often felt guilty or that there was something evil or bad about THEM. I vowed that I would be proud of everything about my son even his disease. Even though my son died I still feel that way.

Over time I have realized the virus isn’t a monster out to “get” me. HIV doesn’t know that it is hurting me. In fact, the virus doesn’t actually kill anybody. It only weakens the bodies defenses. The virus means no harm. I have never in the over the decades that I’ve been treated heard anyone speak of the monstrous CNV virus or any other myriad problems that actually kill AIDs patients. The virus isn’t murdering me, at the worst its involuntary manslaughter.

I had the wake up call about my own mortality at a very young age. But all of this might have made me a different perhaps angrier person but for the special people in my life. My supportive friends, my caring husband, and the marvelous doctors at NIH (National Institute of Health) who treated me and my son. But most important of those special people was my son, Ezra. Before my son was born, I had read about every religion on the planet. Yet I could never get over the sneaking suspicion that death was like TV before cable. The national anthem and then….static. Just thinking about Ezra makes me feel grateful and humbled. My son was an old soul. I learned from him rather than teaching him. I learned about grace through pain. I learned that gentleness was strength and wisdom. I learned how to love until your heart breaks. The Buddhist teach that children who die young often are returning for one last life in order to learn to cope with physical pain before achieving nirvana. I need to get enlightened if I hope to see Ezra again. I have a long way to go.
If your have any questions about HIV or AIDs, impertinent or otherwise email me. I will do my level best to answer honestly.

Links on the web

Be a Friend: Children with HIV speak

!’m deeply proud to be associated in my small way with this project. This book is a compilation of stories and drawing by children about living with HIV. A history of the early AIDS epidemic in America from a child’s point of view. No self-pity and straight from the heart.